Tag Archives: hypoglycaemia

The Tattoo

Folks have been inking their bodies for much longer than anyone can imagine.  The oldest discovery of tattooed human skin to date is found on the body of Ötzi the Iceman, dating to between 3370 and 3100 BC.  Today many people get a tattoo in celebration of the birth of their child, remembrance of a loved one, and of course expression of art.  Me myself, I have never been attracted to the idea of tattoos in the slightest on myself, however, I have no objection to anyone else having artwork on their skin.  In fact I rather admire the work the tattoo artist work does.  The first male love of my life, my Dad has one tattoo; he got it when he was in the army, it has a thistle on it and the name of my mother on it.  I used to kiss it and look at it lovingly and rub his arm and think to myself if someone loves me like my daddy loves my mummy I will be one lucky lady.  My And yes people for the record this has happened.   My hubby does have three small blue tattoos on his tummy, they are markers the radiotherapy he underwent for his testicular cancer.  In 1996 this is the way they set up the simulation and marked the skin and the patient is left with permanent reminder.  Mum and Dad were married for 60 years before Mum died, Steve and I have been married since 1986, following in their footsteps; happy with that.

Both of my brothers, Albert and Brian have tattoos, and my sister Helen has a tattoo.  After my our Mother passed away.  Albert had an image of Mum on his arm.  Helen got a tattoo in remembrance of Mum too.  We all cope in different ways with death and honouring loved ones.

I have a few friends who particularly liked to express themselves one way or another.  Whether it is eclectic dress, many colour hair changing, piercings, and the main discussion of this post getting a tattoo or five.

One of my friends particularly likes to get tattoos.  Louise is a very close friend who has became one of the family.  Lou and Keith, got one of Buddy and Bella’s pups from the first litter, he is the image of Buddy, they call him Gunner.  When the second litter came along goes without saying another puppy had to join their household.  Harris, now one year old may look like his Daddy, but majority of his characteristics are of his Mummy, Bella.  Lou, has been wonderful over the last three years, visits plentiful.  Giving lifts to hospitals.  Helping with fundraisers for Scotland’s Net Cancer Charity – The Ann Edgar Charitable Trust.  What fun we had at The Tea Party and The Music For Nets Night.

Lou is a busy lady, but if she says she is going to help – I can guarantee you she will be there.  The one thing I found harder than anything else was asking for help.  When I had to give up driving the reliance on getting a lift is essential.  The spontaneous hypoglycaemia and exhaustion means I like to plan outings in advance.  Not living on a bus route isn’t ideal.  But Ive got to admit, car travel is usually the best form of transport. So asking for help….. with Lou, you don’t need to ask.   For Many things, hubby Steve and I go together.  Both our sons, Tony and Stuart assist as and when needed.  My sister hazel helps out when she can too, which really lightens the load.

Lou messaged  me one morning Ive got something I want to show you.  Its a present.  But its only for you to see.  I really hope you like it.  I asked if she liked it.  She answered, oh i’m pleased with it.  Left me a tad bamboozled and yet looking forward, as always to her visit.

Later that morning In comes the smiling face, Buddy and Bella run up the long hall and cover our guest in a mountain of blonde hair while dutifully competing for a slobbery snog.  The kettle goes on as always.  I wait in anticipation for the ‘surprise’.   As I bring through the teas and coffee Lou takes off her sweater for the unveiling.    As I catch a glimpse of what I can see on her arm I almost drop the cup.  On her arm she has had a tattoo.  And what is it?  A Zebra.  I see her lips move, I can hear the words come out in an almost muffled way,  I got this for you.  For the first time in my life I can almost say I have a tattoo.  My heart skips a beat and brings a tear to my eye.  I had no inkling, what a lovely thing to do for me.  And to raise awareness for net cancer.  Thanks Lou.

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Why did she chose the Zebra?

In medicine, the term “zebra” is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers. “If you hear hoofbeats, think horses, not zebras.” … This because in the medical community the term zebra is universally used to reference a rare disease or condition.

You can find out much more about neuroendocrine tumours, net cancers.  And particular support in Scotland by visiting Scotland’s Net charity.  This charity was set up by my consultant and a patient,  at Edinburgh’s Western General Hospital.  Her name was Ann Edgar.  The charity can be found at http://www.taect.scot

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A wee bit of home assessment from my nurse

One thing and another its been a busy week.  Started with a visit to the GP on Monday, she is perturbed that despite I’m on my new super duper feeding regime through Lavita, my gastrostomy feed that Marion from the CENT team has carefully worked out for me and I am getting food pumped into me 20 hours per day, I still have an underweight BMI and haven’t gained an ounce.   I’ve got that bloody awful feeling that I need a kick up the ass, I could lie on the floor and curl up in a ball and sleep.  The Doc was also very concerned with the fact that I have difficulty with once of the most important things – getting washed.  Our shower is over the bath, between my poor co-ordination, spontaneous hy0pogleamia, the pain I get and my gastrostomy tube climbing over the bath has caused many accidents: resulting in severe bruising and a hurt pride.  Long and short of my GP visit: bloods taken, my steroid replacements have been increased for the time being, I have to visit her again soon.  We need to get the bathroom sorted.

Its lanreotide week and boy do I know it.  The bowels are flowing more than normal and for the third time the urgency at 3am disturbs my poor sleeping hubby.  Buddy sits quietly at my feet, replacing the lovely warm slippers that I had no time to put on.

 

 

 

Evelyn, one of the nurses comes in on Thursday morning.  The dogs are happy to see her.  They know the routine and watch all that is going on.  She looks at the two of them and says well you will have a wee wait on your ‘doggy mars bar’ today.  Got a lot to get through with your Mummy.  Gastrostomy  site tackled first.  Dressing taken off, all cleaned, the necessary done, new dressing on.  Skin checked and other issues addressed.  Then onto my lovely injection of lanreotide.  It may be a big pain in the butt and cost the NHS a small fortune but it a godsend to me.  My diahrea has reduced from over ten times a day to 3.  And those awful flushes have greatly reduced.  The run up to the injection the symptoms get more problematic but nothing like before I started getting it.  I really wish it had a magic formula and helped with the malabsorption.  Injection in, all sharps in appropriate box etc.

Evelyn takes a pew.  Pulls out a white folder and talks to Steve and I.  Remember last week I asked you some questions and you did well, she said.  That was a base line for us for your mental awareness.  Steve made an off the cuff funny remark and we laughed.  Yes you can only go downhill she said.   No onto some physical questions.  It was all very thorough.  Asking me questions such as can I roll over in bed.  Do I need help with washing and showering.  A great deal of emphasis on my meds, eating, all the personal issues such as my bowel habits, aids I need and use, what I can manage and what I CAN’T.  As always Evelyn was super efficient; making me feel so comfortable and at ease and still managing to get all the appropriate essential information that has to get detailed down.    The nurse is an angel she goes above the call of duty.

It was good Steve was here for all the discussion.  Evelyn already knows how much I rely on him and how difficult things are such as showering, setting up feeds, getting my medication organised – we didn’t need to go into the nitty gritty.

The outcome; I’m an at risk patient.  BMI far too low.  At risk of falls.  Has pain.  Risk of infection.  I dolly daydream into a daze, I furniture walk without realising it.  The one thing I certainly cannot do is get up of the floor on my own. Give me a piece of furniture or better still my devoted strong man – Steve.   I love this man 💕💕

First Steps To Writing A Care Plan

nursing_care_plan_by_nica388

 

I had an appointment at the Western General Hospital with a consultant I have never seen before.  The Team she is with is The PACT Team.  This is Patient Experience and Anticipatory Care Plan Team.  The main purpose of the meeting was to discuss my health problems and for the consultant to take notes and later write up a care plan which can be accessed by A & E staff and out of ours doctors, to better understand my health problems and my preferences.  Once the plan is written up a copy will be sent to my consultants, my GP and myself.

 

It was rather a daunting experience, chatting about any possible imminent admission to hospital.  The consultant was lovely, and she explained everything.  It gave me every opportunity to talk and ask questions.   We discussed what brings me into hospital and what is best for me and what staff would benefit from knowing.   She asked me some very personal questions and I gave her truthful answers.  It was easy to chat to her, she was kind and caring.  She turned the computer screen round so I could see what was type written about me.  There it was in black and white: various medical conditions that affect every day life.  Just for a moment it was once again like hitting that brick wall.  I looked at the screen the words were a blur.   Seconds later we were chatting…………

 

Do I think I will benefit from the care plan?  Hell, Yes!!  The Doc took note of all the problems; e.g. carcinoid syndrome, profound hypoglycaemia, labile blood pressure,  gastrostomy feed tube (leaks), poor co-ordination, photosensitivity, hydrocortisone replacement therapy, lanreotide injections every 21 days etc. etc, etc.  And she made a note of what staff need to have available for me.   Fingers crossed Im not in anytime soon.

 

Dedication of my nurse & new dressings

Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube.  After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage.  It is apparent that the surrounding area is never going to totally heal.  The health professionals have tried their best.  I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings.  My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore.  After the trial and error of creams the best one and the one to stay is the cavilon lollipops.  They act as a barrier, and its a wonderful life saver I can tell you.  As for the dressings, well many have been tried and tested.  At one point I looked like I had been shot.  I was covered from my breasts to my waist.  The nurse on the ward thought it best to keep it all sealed.  This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast,  dressings, and good old fashioned crepe bandage.  The dressing that worked was the foam dressing.  A hole was cut in the dressing and it was wrapped round my peg.  The only trouble with this is the amount I leak out.  The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.

 

 

My nurse, Evelyn, that comes in and changes my dressing at home noticed this.  Evelyn is a dog with a bone.  One day she came in with a booklet and a different dressing.

Do you fancy giving this a go?  She asked me. Can only give it a try was my answer.

So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply  it.    This dressing is designed to absorb the leakage.  And guess what – it does it so well 🙂   I have even noticed a reduction in the odour.  The combination of the barrier and the new dressings, my skin is much improved.   Its far from perfect and it will always leak.  But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful.  Cant see me  shifting from the Keramax dressings in a hurry.  And as for my nurse well she is a star.

Well I’ve Done It: I’m 50 :)

Well today its my birthday.  I am half a century – the big 50.  Many folk hide their age, dread being fifty and pretend their younger than they are.  Me, I’m happy to be here.  I feel privileged to say I have hit such a milestone.  My fortieth decade was a mixed one.  There was many happy events, lots of love and laughter which keeps me going.  However, I  also had to face a few difficult life challenging times which were so difficult.

 

Steve & Me
Happy to get up the castle

 

 

I had many occasions to have cause for celebration.  Both my sons attended university in this decade furthered their education.  Our delightful labradors, Buddy and Bella  came into our lives; the unconditional love they give is amazing, I really can’t imagine my life without the hairy beasties.  We delivered a litter of puppies from them, and have kept in touch with puppies and owners.  Now made some lovely friends.  Some wonderful children have been born in the last ten years who are really close to my heart.  There have been a few very happy weddings.  I have mad many new friends.  Need I go on.   Life is precious and for living, it is all too easy to get bogged down with our problems.  On a personal level Steve and I are as much in love as we were when we were teenagers.  I believe this is my weapon – Love.  

The one thing I am certain is in the last ten years I felt loved.  The first five years were very difficult, I suddenly lost 3 stone in weight, felt very ill, and no-one seemed to know why was wrong with me.  It took a while to get my health situation sorted out, but with the love of Steve, the boys and my parents I felt secure.   I’ve had a few hairy moments been in hospital with septicaemia for 7 weeks, and boy was that scary.  Now got my gastrostomy tube fitted.  Life isn’t always easy with a stoma.  Ive been admitted with several infections.  However, its much better than it was,  I have a fantastic medical team and nurses that come to the house which is fantastic.  And I’m still here to tell the tale and thats whats important.

The second half of my forties were slightly more challenging than the first emotionally.  Amongst other things:  A very close uncle died, my youngest son had extensive brain surgery, my Mum died, my eldest son had meningitis, hubby had eye surgery for detached retina.  But you know what we got through it all.  The boys are doing well.  Steve still has problems, and only had surgery last week again, but the brave bugger is dealing with it the only way he knows – full of courage – like a lion.  It will be three years on the 9th August that Mum passed.  I miss her every day.  We had one of those relationships that we spoke or text every day.  Mum wouldn’t want me moping around.  She was a great character, a beautiful woman that I looked up to and admired.

One day in the consulting room at the hospital my professor handed me a card.  It was for the NET Tumour Support Group that I now meet regularly with.  .  We have all became great friends.  Sadly, one of the friends that I was very fond of passed away last year.  However, I would rather have  spent time with her, laughed, cried, etc, even for one year and then felt the pain of her loss than not have met her at all.   we all meet regularly every month and have a great time.  Its not doom and gloom, we meet at each others house or in the pub.  Partners, friends, carers go too.  You can have a look at the charity’s website to see what work they do:  www.taect.scot  I’m looking forward to helping organise the tea party in Pencaitland in November for NET Cancer Day.

I’ve had cards delivered for my 50th birthday.  Including cards from friends in the Net group which is lovely.  One of my friends in the group, Barbara was very thoughtful, because my eating is restricted, she made me a flower birthday cake.  I could have cried, its so beautiful.

Looking forward to spending my 50’s  with Steve.  Doing what I enjoy.  Taking photos,  writing, cuddling my labs, crafting, etc.  My big aim is to get back into baking and cooking, just because I’m not eating as I did doesn’t mean I should stop what I love.  I got a beautiful mixer last year and boy is it going to get its ass worked off now that I have got over that hurdle.    Have a great weekend guys.  After Ive finished my treatment today My hubby is taking me to The Edinburgh Festival tonight and tomorrow night.  Tonight its Craig Hill, tomorrow its Nina Conti

 

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Dying To Look Good

You look great –  that’s the words we all long to hear.  We all want to look our best.  Whether we are nipping to the supermarket, having a lazy day,  or going out for dinner.  The last thing I want is folk to be surprised that I look normal”

So why is it that there are times when people say certain phrases to me that can set my tummy into turmoil and make me feel guilty for having an illness.  These words are usually said in such an innocent manner and no malice is ever meant.   Sometimes I can get upset by what has been said to me, regardless of how harmless the conversation is.  The person paying the compliment is usually always blameless.

The conversations and body language that are directed to me are intended to be kind and gentle.  A gentle hand stroking my arm and the words that first come out how are you keeping?    One of the ladies in our support network group particularly doesn’t like this phrase.  I have spoken to many people whilst I have been in hospital and yes they are affected by what’s said too.  Certain words affect folks more than others, the word keeping was one that some found hard to deal with.   I’m not quite sure why, as I say it’s always said with such niavity.  Perhaps it’s because the word keeping is associated with custody and criminal.  Many people with with chronic illnesses have life changing situations after their diagnosis and can often feel like a prisoner in their own home and need the help of others.  Maybe this is a possibility why keeping is not liked by this person.  I can’t go out on my own, and I’m very grateful for the help I get, not feeling sorry for myself – promise 😘.

Most of the time words said don’t bother me too much at all.  I can put them in a box and breathe.  What really drives me crazy is the tone that the  conversation is spoken to me in.  The very pitch can affect my mood, and hence a knock on affect on my health.  Most days I will banter and have fun, if something is said in a teasing manner I will take it like water off a ducks back.  However if I’m having a difficult day the slightest thing will reduce me to tears.

So why do we want to look good?  – why not?  I personally want to look like my old self.  I want to be my husband’s wife 💕.   My wonderful staff at Ninewells hospital in Dundee have specially manufactured coloured cream for my skin to put on every day.  The transformation is fantastic.  It covers every blemish, wrinkle, gives me a lovely colour.  And it looks so natural. Once it’s on properly you wouldn’t know I had cream on.   For me it takes a lot of work to look “normal” – I smear my entire body in several creams three times a day.  Steve’s cousin Anna commented on how much work it was and how good the transformation the Dundee cream made – this actually made me feel good that she was so open.

The good thing about the chronic illness.  It’s on the inside.  We can cover it up.  Put on the war paint and put on a smile 😀😀  it’s good to smile, it’s infectious. Smile and the world smiles with you.  When you are all dressed and tried your hardest to look good, whether you are dressed to the nines or in a tracksuit, and have make up on or not.  If I am happy I always look better.  I know I am loved and this certainly makes me happy.    It can be hard to look good for anyone at anytime but I will say my family and friends do make my life much better.

I love to buy and get treated to nice clothes and accessories.  My favourites are Ragamuffin, Fatface, Michael kors, Pandora.  My hubby, Steve is so good to me.  Steve wants to treat me and make me feel good, he is the one that sees me feeling so rubbish at home. And puts up with my grumpy pants sulking moods 😂😂 – for my sake just as well he loves me.

 

Some Time For Us

Back from the NET specialist just ten days and we find ourselves travelling up the scenic A9 in our Audi TT roadster with the roof down.  Boy it’s great to be travelling for total pleasure.   We are on our way to Nairn.  Going to celebrate Cousin Sharon’s 40th birthday.  This was no formal birthday party.    We were dressed in 60’s clothing.  And the venue  was a holiday park.  Most of the family stayed at the holiday park for the weekend.  Steve and I opted to stay in a hotel just for the one night.   For us this worked out fantastic.

Our friends Louise and Keith looked after Buddy & Bella for the night we were away.  It’s always easier to go away when I know our puppies will be well looked after.  We pamper our pouches and we know they will get lots of loving from Lou and Keith.

The drive up was great.  The sun was shining.  The roof was down all the

We drove into the holiday park , as we were parking the car, there were a handful of hippies walking towards the social club.  Yes we are in the correct place.   As we walked into the bar there was a  see of faces,  nearly everyone had a 60’s outfit on.  We saw a waving hand, it was Anna  signalling to where they were.  Just as well really, because when everyone is dressed up so well we were all so different – especially when we had wigs on, etc.

This is is picture I took of Steve at home when he was trying on his outfit 😀



When we approached the family, Steve’s auntie Margaret turned round and almost leapt off her seat.  She stood on the floor and hugged her nephew tight. With the height difference between them Steve was on his knees whilst cuddling his aunt and neither of them looked out of place. There were tears in both of their eyes,  without doubt they were both genuinely pleased to see each other.  Auntie Margaret’s five children, Annette, Pauline, Patricia, Jimmy Phil and their partners all welcomed us into the heart of the family.  Everyone from the eldest to the youngest grandchild made us feel welcome and at ease.

Steve and I went back to the Hotel to get ready :

When we arrived back we had a meal.   We sat in the restaurant and had something to munch before a night on the tiles.  Then it was time to party…….


We all had a fabulous time. Steve and I had to get back to the hotel for 12 midnight.  We popped over to the caravan site in the morning to say our Cheerios.  We had a blether with auntie Margaret, cousin Phil, and his wife Jackie.  Annette came round to the caravan in the morning, as did Jimmy and Theresa.  This gave us the opportunity to see them and have a coffee and a blether before we drove down the road,

On the way home, Steve and I blethered away, enjoyed each other’s company in the confined space and had the chance to take time and discuss things.  Travelling has many advantages and opens up opportunities to let us air our views and share our thoughts, worries, anxieties, etc.  We pulled in for a spot of lunch at House of Bruar, of course, we can never go anywhere without me getting treated.  Steve bought me lovely soft blue cashmere gloves and a navy cashmere silk hat.

We arrived back home.  I was shattered.  The drive up to Nairn, the late night, the socialisation all contributory factors.  It had been challenging, as always, finding somewhere to stay, packing all my meds, creams clothes, pump, and every thing else that goes with me.   Was it worth it?  Oh most certainly.  For  two days we drove in Scotland with the roof down, slept in a lovely hotel, and most importantly we spent some quality time wIth family who made us feel welcome and had us belly laughing,  would we do it all again ?  Try stopping us.